Sunday, January 13, 2013
I was talking with some of my colleagues in the world of Autism treatment, and heard some disheartening facts about facilities meant for housing and caring for adults with disabilities. It's not as if I didn't know some of the despicable details, but in an effort to maintain positivity, and seek peace and beatitude, I have been trying to convince myself to be more present, as this seems to be a lifetime away.
I had a lovely conversation with my beloved Dad about this not too long ago, where he explained, and agreed, that the happiest people are not the people who live in the past saying "if only" and "back in the good ole days," nor are they those who live for the future saying "when this happens then..." or "I'll be happy IF..." but rather, as many of us know, the happiest people are those who can see the beauty in the moment, find gratitude in each day, and be present and authentic.
For the most part I would say this perspective is working for me, and I am, most of the time, pretty (maybe fairly) content. Most days, I feel like I can handle our circumstances, some days I feel like I am drowning and others like I am kicking ass, but for the most part, I am doing pretty okay! Better than okay, even. But when knowledge about the horrors associated with what is potentially your child's future come to rise, it is as if I have been kicked in the stomach and slapped in the face. I feel helpless and out of breath. What do you mean a group home won't take individuals with sleeping disturbances who can't wipe their own butt? The "nice" facilities discriminate the disabled? Shit!
I have ALWAYS said, and I still maintain that my disabled child can live with me for as long as I am breathing. She is a part of me and will be in my care for as long as physically possible. But, as every parent with a severely disabled child fears, what happens when I am not here. What happens if she outlives me? Where will she go? Who will care for her and love her and provide an enriched environment for her? Deep breaths. Stay calm. Think.
Even as I write this, my beloved oldest daughter is climbing on me and making sounds many of you might balk at. She has (in the last five minutes) knocked over two lamps, is chewing relentlessly on her chewy tube necklace AND her shirt, and has soiled her diaper. She is almost 7. It is not "behavior." She is, in many ways, like a giant baby. Developmentally, below that of a young toddler. We feed her, change her clothes, and meet her every single need. Watching Avery is like bodyguarding. It is a 24/7 full time job that is becoming physically taxing. Thankfully, her temperment is delightful though distant, and her general disposition is easy going and pretty go with the flow.
I don't mean to complain. I adore her. I am, day by day, coming to grips with what she can and can't do. I BELIEVE that she is so much more than her disabilities and I KNOW that she brings an abundance of grace to all who know her, but if her past is any indication of her future, then what and how should I plan?
In the same conversation I referred to earlier, my dad explained that plans rarely ever pan out the way you intend them to anyway. The only thing that is predictable is unpredictability. Absolutely true. But that being said, I can make some arrangements that may ease my heart and mind a little bit...
Avery is blessed with two sisters. Although I do not expect them to devote their lives to caring for her, I do expect them to love her and learn how to look out for her. As older children, and then as adults. Hopefully THAT plan pans out, but who knows! Thankfully, they are their own strong little people with their own big ideas! Avery also has a mom (me) who by some miracle was professionally educated and trained to work with individuals with disabilities. Hopefully I can devote my career not only to helping others, but to create a place where Avery and people like her can live in a domestic, loving, enriched and purposeful environment. Avery also had a dad, who is the hardest working person I know and who loves her without conditions. Period. Though he may not have chosen a life with so much heartbreak, he is the PERFECT dad for Avery, and he makes me a better mom for her as well. And finally, Avery has several other loved ones who we may never have met if it were not for her challenges, but who have enriched our lives tremendously. It is nice to have a select few who really know and see what our day to day looks like, and who can provide some much needed respite and support.
So, now I can breathe. I may not know what our future holds, but I can try to find a healthy balance of living for today and making responsible plans for tomorrow. I know almost nothing for certain, but I know that I never could have imagined that I could find such glorious love, joy, grace, and hope in the hand we were dealt. So no matter what comes around the corner, I am trying to open my mind to the realization that we can handle it. Even when and if we can't . In so many countless ways we are blessed beyond measure. And if I keep my eye on that, I know I can live in uncertain happiness.
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Loved it! We are pretty much in the same boat, and what a cruise it has been!
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